The things that fill my days and help me to understand the work that God is in the process of.
1.31.2011
Kid Quest Needs Help
There are so many aspects of our life with Rett syndrome that I hate and honestly begging for money is one of them. Yet I get so many opportunities. I will get my ranting part out of the way first, then move to the begging. On a personal note, the begging comes so hard because of the relationship that I have had with the church (meaning local people) as a result of us becoming a family with disabilities. Prior to being part of this world I never new it existed, it was neatly hidden away, somewhere else, out of sight out of mind. Truly, that is a VERY SAD statement. I know what the thinking of the people I am frustrated with is like, I at a time, felt much the same way. However, it is flawed. So to anyone reading this blog who is not a member of the disabled community, let me clue you in. As Claire's disability evolved, her needs became greater than what we could handle as a family, without support we could not keep her in our home, yes, Rett syndrome is THAT hard. As we realized this there were plenty of well intentioned people that just didn't know what to do, it was one of the most painful and awkward parts of that regression period. I never thought that I would depend on public support, but we do and we have never been so happy to pay taxes. I wish it wasn't so, that the church could give us the support that we need, but sadly the world has come to a place where that is just not how it works. So, in the void of a community that we expected to be filled by the church, we found Kid Quest. It is a house full of wonderful loving people who just hang out and have fun, which is pretty much the thing that Claire needs more than anything else. She goes on Thursday nights so that I can get a break from giving her dinner once a week. They have theater day and put on play and all sorts of wonderful shannanigns. It was through her time at Kid Quest that I learned Claire liked the Beatles, who knew? During the summer they will go to the boardwalk or bowling. it is a place that I can drop Claire off without worry. I know that they are 110% capable of meeting her needs and keeping her safe. She has gained so much confidence having a place like this to go and hang out at. In rettland we discuss the rich environment and getting the wires to fire together, certainly, Kid Quest does this so much better than most of the therapy that we go to. So you can imagine the sick feeling in my stomach as I read the email that there was a $75,000 shortfall and unless the center gets some money fast, it would be closing it's doors at the end of February. That isn't much, it really isn't. It is more than I could write a check for, so here I am begging again. Please, if you would like to help the families of the Santa Cruz area or just Claire, consider making a donation. You can visit this link, then click on the fundraising tab on the left or you can mail a check to 704 North Plymouth Street Santa Cruz, CA 95060 checks made payable to Balance 4 Kids as that is the 501c3 that runs the program. Thank you very much for your support!
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